Song-in-action Blog

Lady Gaga raises Lupus Awareness on Larry King

Posted by Katina on June 5, 2010 at 3:28 am

This week one of my twitter-friends sent me a link to music-related Lupus story. I was intrigued. Lady Gaga might have Lupus? Say it isn’t so. As anyone with Lupus can tell you, having Lupus sucks. I was very sad to hear that the singer might be battling with the disease. So I clicked the link to Lady Gaga’s interview on Larry King to listen for myself.

Larry gets right to it. Do you have Lupus? Sort-of, maybe, maybe not, no?

According to Lady Gaga, she was tested for lupus, doesn’t show any signs, is “boderline positive, ” but does not have lupus. What does that mean? Lady Gaga doesn’t appear to have Lupus right now, but may or may not develop it later.

The Lupus Foundation of America has used Lady Gaga’s story to education the public about the nature of the disease (read here) and the diagnosis process.

From the LFA blog:

“There are many challenges in confirming whether a person has lupus.  Lupus symptoms can be unclear, can come and go, and can change over time.  It may take months or even years for doctors to piece together evolving symptoms to accurately diagnose lupus.  And the symptoms may be related to another condition entirely. . . The anti-nuclear antibody (ANA) test is used as a screening test for lupus. We know that 95 percent of people with lupus have a positive ANA.  Therefore, if a person has symptoms of systemic lupus but their ANA test is negative, that’s generally regarded as pretty good evidence against lupus being the explanation for the symptoms they are having.

On the other hand, if the ANA test comes back positive, that IS NOT proof of lupus.  The positive ANA is only an indicator; it is not diagnostic. A positive ANA can be found in a number of illnesses and conditions.  In fact, many people may have positive lupus tests-particularly the anti-nuclear antibody test-and yet they do NOT have the disease. . . .”

For me, Lady Gaga’s “Lupus story” is both a cautionary tale about celebrity and a moment of opportunity to see a musician raise public awareness for a disease.

When I was watching the video, my first thought was why is Larry intruding into Lady Gaga’s personal business like that?  Was she ready to bare her health status and her family’s history to the entire world? You only have to Google “Lady Gaga Lupus” to see how this story spread around the Internet. But I don’t know if Lady Gaga was offended since she seemed genuinely concerned that her fans were concerned about her health.

So on the one hand, her celebrity status has effectively given everyone liberty to speculate about her very private health issues.  On the other hand, she seems ok with it and this provides a platform for her name-recognition to provide a spot-light on the issue of lupus.

The whole situation reminds me of when Christina Applegate was diagnosed with breast cancer. She went on to be a breast cancer advocate, sharing deeply personal information to the public in order to raise awareness of the disease (like talking about having a double mastectomy).

It also reminds me of two celebrities that do have lupus and have used their status to raise awareness of the disease. What’s really interesting to me is that they are both male. This stands out, because while Lupus is a disease that can plague both genders and people of all ages, most people who have the disease are women of childbearing age .

The singer Seal is a very visible face of discoid (cutaneous) lupus which is a disease of the skin.

The extensive scarring on Seal’s face shown in the picture above is from the discoid/cutaneous version of the disease.

“Cutaneous refers to the skin, and this form of lupus is limited to the skin. Although there are many types of rashes and lesions (sores) caused by cutaneous lupus, the most common rash is raised, scaly and red, but not itchy. It is commonly known as a discoid rash, because the areas of rash are shaped like disks, or circles . . . Approximately 10 percent of people who have cutaneous lupus will develop systemic lupus. However, it is likely that these people already had systemic lupus, with the skin rash as their main symptom.” Lupus Foundation of America

Rapper Trick Daddy has also recently come forward to talk about his lupus diagnosis. He has systemic lupus (the version Lady Gaga was tested for) which is a potentially more serious version of the disease because it can affect the body’s major organ systems.  The disease is chronic (meaning it is a long-term illness) and an autoimmune disorder that can damage any part of the body (skin, joints, and/or organs inside the body).


The Miami rapper discussed his Lupus diagnosis on a radio show (discussed here on Hip Hop Crunch)

“I went to the doctor, like, 12 years ago. She took all kinds of tests, because I was trying to get rid of what we call dry skin; she did biopsies and blood tests and swab tests. She told me I have lupus.”

“I am allergic highly to the sun, that’s my worst enemy. It’s like an AK-47 (gun) with a double clip on it,” Trick explains. He adds, “A lot of people try to cover it up with regular make-up. It makes your skin pigmented. You can go from dark to light and not light to dark. You have to cover it up and conceal it.”

Like I said at the beginning of this blog, Lupus sucks. If you are interested in learning more about men and Lupus, read this. If you are interested in learning more about other Lupus stories, check out CouldIhaveLupus.gov.

Take care,

Katina

P.S.  Why the lupus blogs? In addition to blogging about all things music and activism, I am active in the Lupus community. I am excited to be the co-chair of the 2011 DC Walk for Lupus Now hosted by the Lupus Foundation DC/ MD/ VA chapter and a 20 year + lupus survivor. To read my story, click here.  While I have always told friends and family that I had lupus, this is not generally information that I put out on the street. Who would? But this past year I attended a function held by the DMV Lupus chapter and was touched by how others were touched by my story. “20 years! Wow” was the typical reaction. After the event, I was asked to serve on the 2010 DC Walk for Lupus Now committee and have been a public face of lupus since then.

Filed under: Lupus

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